Welcome Celebrating over NINE years off of Myasthenia Gravis medications
Take charge of your life NOW.
One size does not fit all, neither should your wellness plan and LIFE.
Journey to Wellness
MG Warrior on a mission
On September 23, 2014, I left my neurologist speechless and it felt good! Two months prior my symptoms from myasthenia gravis had me battling extreme fatigue, difficulty breathing, slurred speech, droopy eyes, double vision, full body muscle weakness, and elevated liver enzymes from taking Imuran. I failed on Cellcept and IVIG caused me to get chemical meningitis. Every morning it would take me 30 to 45 minutes just to get out of bed. I experienced chronic headaches from the numerous neck and hip problems which started as a result of falling repeatedly and unexpectedly. It was very embarassing to lose control of my muscles without warning. Going into the office was not an option on most days. I've been in this place before and I knew wellness was possible but this time I wasn't sure how. I love being very active and sickness is not part of my life's plan. I still want to learn how to do the running man! Keeping a positive attitude and staying in gratitude are vital tools for wellness. I still have a lot of places to see and being ill for two years was taking a toll on me, my family and my professional career. This latest MG flare up started on 12/12/12 shortly after being given the wrong medication from a surgery that resulted in a serious infection. This serves as a reminder to ALWAYS have a medical advocate or be your own. No one knows me better than me. I spent the next two years looking for the right combination of medication and supplements. Dealing with more medical professionals who had only read about MG but had zero case experience or looked at me once again like I was faking. As a result of the uncertainty of my professional career, I purchased a travel franchise. Owning a travel franchise would allow me to work from anywhere which at the time meant my bed. Just because my body was failing me I knew I had to make my franchise about more than planning fabulous vacations. I decide my focus would be on providing an opportunity to help non-profit groups raise funds via a travel program, servicing the LGBT community and people like myself with special needs. Mentally, I knew I would prevail but my body had other ideas.
My neurologist referred me to an oncologist to get a Rituximab treatment. This is a light version of chemotherapy that does not cause your hair to fall out. I felt like I was at the end of the line and agreed to it. Feeling like you are about to die at any moment has a way of turning things around for you. Not losing my hair was key and vain on my part . My hair covers my butt and losing it to a toxic drug like chemo would not have sat well with me. To my surprise my insurance company called me to let me know how great Rituximab works with MG. They also informed me my out of pocket cost would be $5000 per session! My stress level went up at the thought of adding more medical bills. A five day delay at the oncologist's office caused me to seek help elsewhere. This help was found by seeing a three part special on medical marijuana but more specifically hemp seed oil and cannabinol or CBD for short. I'm NOT a smoker but I was curious about the oil. The show talked about the difference between CBD and THC. In short the CBD does not have the component that makes you high and therefore is able to be sold legally in all 50 states. Once I heard the various stories of how the CBD oil helped people with neurological disorders, pain, stress, cancer, and other symptoms similar to myasthenia gravis I had to try it to relieve my symptoms. I figured it had enough in it to help with myasthenia and the way it worked in the body made total sense to me. It was in-line with my personal theory on how myasthenia gravis should be treated of stopping the wrong messages from being sent to muscles. I went to their website and there were countless abstracts referenced on conditions ranging from cancer to rheumatoid arthritis to MS. Taking a chance would be an easy decision. I knew marijuana had healing properties from my great grandmother but I never took the time to find how it worked. I had nothing to lose except the $200 it would eventually cost me for a 1gram bottle and a 3gram bottle. I started the 1 gram drops on August 27, 2014. In doing so I made the decision to stop taking all of my myasthenia gravis medication. Looking back I can see how this could have gone horribly wrong and WOULD NOT RECOMMEND anyone do it without working directly with a doctor and letting them know. My body is very sensitive and if I take something I usually know within 24 hours if it will help or the known side effects.
I noticed a change in my body from the first dose. My body felt like it was calming down from the ceiling to the floor very slowly and methodical. I was able to go up and down stairs with little fatigue. Getting out of bed is no longer a problem. I'm able to exercise again for the first time in years. I feel like I'm getting my life back however I still take things one day at a time. Myasthenia Gravis is unpredictable. Knowing my body could fail me at any time keeps me humble. I don't take this renewed energy of life for granted! I am still off of all MG medications. This is what surprised my neurologist. Hearing how I got myself well from taking hemp and legal CBD oil sparked his attention. He wanted to know if it made me high. I advised him it doesn't and it can't because it doesn't have the THC. He found this fascinating but of course he did his professional duty and performed various strength evaluations.
My neurologist couldn't believe how much strength I had compared to two months ago. I showed him my lab work which revealed my liver enzyme were finally in a normal range, my blood counts were normal and the nine panel drug screening was negative for everything tested which including marijuana. For good measure I also provided a urine analysis that was also negative for marijuana. My neurologist advised me to keep the Mestinon and other drugs handy but encouraged me to stay well. The Rituximab treatment would be revisited only if I started to feel poorly. He wanted to see me in three months to make sure I am staying well. I told him he could give his patients my number if they have any questions about what I did to get well. I called the CBD company to thank them for making such a great product that is helping me live my life fully. I don’t know if this will work for anyone else but I would be remised if I didn't share. If this information helps just ONE person it is all worth it. I have been sharing my journey and more people are finding it helps them however others did not find relief in their symptoms. I have a theory as to why but you will have to read it my book.
Forget whatever preconceived notions or hang-ups you may have about marijuana. Trust me I had plenty and I grew up around it. This is hemp. Check out the research and keep yourself informed. Some of us can’t afford the price tag that “chronic illness“ carries with it. Waiting a decade for approval is simply too long. Critics of CBD will claim my results and the results of many others is just anecdotal. The fact is I am off of all MG medication and I am living FULLY. Can it still be considered anecdotal when you've reached the eight year mark? I welcome my input with any CBD clinical trial for Myasthenia Gravis.
I know all CBD is not created equal which is why I can only personally recommend a handful of brands. Make sure the CBD you are considering has certification of its contents by a third party. Look for the words "Full Spectrum".
****************** The Government Knows the benefits **************
The United States Department of Health and Human Services filed patent number 6630507. The title of the patent is "Cannabinoids as antioxidants and neuroprotectants" for use treating a wide range of diseases. Just let that sink in for a moment.
Putting words into action: Be the change!
I've been a myasthenia gravis advocate for over 15 years and have studied holistic health since 1998. In searching around I found there wasn't an organization that offered holistic information as its main function if at all for myasthenia gravis. No one wanted to attach CBD or medical marijuana to their organization. This has long been a disservice to the MG community that needed to be fixed. To that end, I along with other like minded individuals started the Myasthenia Gravis Holistic Society. It started out as an online group in 2019 and now MG Holistic Society is an official 501(c)(3) organization! We are fueled by passion with our volunteer team. This is all very exciting to turn pain in to passion. There is a lot of work to be done when you create something from nothing but we are like Warren Buffett in our approach. We are in it for long haul and hopefully one day our philanthropic endeavors will match!
So far we have been able to provide health coaching scholarships to six people with more planned for 2022. We launched the MG Vision Board Program. Books are available on Amazon however with the program they are free. MG Holistic has partnered with a CBD company to do a micro-study on CBD and myasthenia gravis. We are super excited to have the first holistic MG Awareness Day on June 4th in Atlanta and Green Bay. Visit www.MGAwarenessDay.org to attend either FREE event.
A preview of my wellness plan:
Eliminate toxic people or have limited contact with them. You are too important to keep dragging yourself down with negative people.
Spiritual balancing for my mind, body and sanity. Stand up for yourself. Find a positive support system.
Never give up on yourself. Never let anyone place limits on what your life is supposed to look like.
Always advocate for yourself. Ask questions if you don’t understand.
Experience as much of life whenever and where ever possible. I'm always mindful that life is not a dress rehearsal and putting off things usually means it will never happen. Instead, I make plans and more plans to live a full life. Don't be afraid to put yourself first. It is not being selfish. It is being responsible.
Don't take on other people's stuff. Some people love to dump their problems off on you and expect you to fix it, do it or solve it. If you have not gotten your own health under control your response should be a polite no. In fact practice saying no if you have a hard time. When you are in a better state of health you can see more clearly and then assist others with more positive and loving energy.
Light daily exercise. As a certified personal trainer I figured out what works for my body. I recommend moving your body with purpose for at least 15 minutes in the morning and 15 minutes in the evening. It could be dancing, light exercises with low repetition, chair exercises, walking, etc. You have to do something everyday to move your body. If you can't move your body on your own ask a love one to help you. DON'T stay stuck in one place on the couch, bed or in your mind!!
Vitamin D3 - I take 50000IU once a week for bone and immune support. Ask your doctor to check your levels first. Remember vitamin sunshine!
Probiotics - I use one 50 billion CFU at night. 70% of your immune system is in your gut so take good care of it.
Omega 3 fish oil - This is great for inflammation. Good fish oil will tell you to keep it refrigerated.
Coenzyme Q10 - This was added because of the possible benefits of improving muscle strength, reducing oxidative damage that leads to muscle fatigue. Our bodies make CoQ10 naturally and store it in the mitochondria of our cells however we make less as we age. (Check with your doctor if you are on blood thinners, hypertension medication or getting chemotherapy)
Digestive enzyme - Taken as needed 30 minutes before meals
Kelp - Instead of taking a capsule I add it as a spice to my food in place of salt.
Meal replacement smoothie - I use brands like Prograde, Vega , Aloma Lily or Metagenics brands. Smoothies are great when you are having difficulty chewing. I also make a variety of green smoothies. These smoothies are a powerhouse addition for my digestive health, improving energy, adding vitamins and other nutrients.
B 12 injections - I use to get these weekly before I was diagnose with MG to boost my energy and to help me travel for a week. Now I get them when I've overworked myself or to prevent fatigue when I travel. If I am unable to get an injection I will use a B-complex supplement. One thing to note is you may want to get Methylcobalamin injections verses the synthetic version Cyanocobalamin.
As with anything check with a licensed medical doctor for possible contraindications. Supplements are NOT regulated by the Food and Drug Administration.
I studied various holistic health treatments and I prefer using tools that support the whole body. I usually have 2 or 3 homeopathic remedies on me at all times.
Cannabidiol also known as CBD:
I take a 1 gram (250ml) drop in the morning before I put anything in my mouth. This is very key for the receptors. Keep the CBD under your tongue for at least a minute or two at a minimum. Do not drink or eat anything 30 minutes before or 30 minutes after taking CBD drops/tinctures. If you decide to try CBD pills take them on an empty stomach and wait at least 45 minutes afterwards before eating.
In the evening I take two drops of the 3gram (500ml) bottle at night or when I over do it. If you decide to try it let me know how it or if it works for you. Some people may need higher amounts of CBD or even the one that has a low dose of THC in it. By low dose of THC I’m referring to percent.
- CBD is not a miracle cure and I want to be very clear on that fact. Anyone diagnosed with MG knows it is a snowflake disease that affects everyone differently. I know some people won’ t try it because they are waiting for the right clinical study to tell them it is okay. Meanwhile, people with MS are getting great success and clinical research. It took over 50 years for new medications specific for MG to be developed. I prefer things that are less toxic to my body especially if I need to take it for a long term.
- It may take one day or fifteen days to see a difference in your health. My ECS was so depleted I saw results immediately. Take note of how you feel physically and emotionally. Review your notes weekly. Take note of your improvement in sleep, pain, stress, inflammation, movements and energy level. Remember it is perfectly okay to feel better!
- I will continue to test various brands and make recommendations based on my findings.
How long have I been diagnosed with MG?
My symptoms started in 2001 immediately after getting a vaccination for a mission trip in Africa. I believe the mercury or polysorbate 80 in the vaccine activated the myasthenia gravis. I was extremely fatigued that later led to double vision, difficulty holding anything, slurred speech, then muscle weakness in my legs which caused me to fall (over 100 times) and on some occasions unable to get back up. My corporate position had me traveling up to three weeks month and prevented a timely diagnosis. I did not get diagnosed with MG until 2003 when I went into a crisis while trying to return to Duke University to complete a project for work. All I wanted was enough energy to make it to the airport so I wouldn't miss my plane. That crisis landed me in the hospital for over 30 days where the treating neurologist thought I was drug seeking or a needed psychiatrist consult. I have since learned most women of color are accused of drug seeking when they are presenting with similar symptoms. The symptoms didn't make sense to any of the half a dozen doctors who treated me so I knew I was in for a fight with this unknown neurologist. I never once asked for a controlled substance. I couldn't walk and needed answers! Thankfully, I knew several doctors personally at this hospital who knew I was not faking or drug seeking. When the lab work and nerve conduction study with repetitive stimulation both came back positive for myasthenia gravis it was all hands on deck and suddenly I was being treated like a science experiment instead of person. Apparently the acetylcholine receptor (AChR) antibodies in my bloodstream were higher than the hospital had ever seen. I tested positive for the binding, blocking and modulating acetylcholine antibodies removing any doubt as to my diagnosis. No apology from the physician who thought I was faking.
In 2005, the National Academy of Medicine (formerly the Institute of Medicine ) found that “ racial and ethnic minorities receive lower-quality health care than white people - even when insurance status, income, age, and severity of conditions are comparable.” Why do some medical professionals miss this diagnosis? Why had it taken so long for answers? The medical treatment at the hospital was less than stellar. Countless medical mishaps almost resulted in my death. All I could think about was getting out of the hospital and finding more natural solutions for my health and wellness. Sharing my experience allows others to put it on their radar to always have someone with them or their loved ones for ANY and ALL medical visits.
Did I have surgery?
Yes, but only after I got confirmation of a tumor on my thymus. Having your chest cracked open is a major deal and traumatic. The first surgery had to be repeated to remove defective wires. To date I've had three surgeries on my chest and radiation!
My first surgery was in 2004 and I wish I did more research back then. I would have requested information on the robotic surgery instead of having my sternum cracked opened. This surgery DID NOT put me in remission however since my thymus had tumors on it I had no choice but to have it removed. The second surgery in 2006 was to remove the defective wires that were literally poking through my skin. It took several doctors figure out why I was still in so much pain. Pain that I refused addictive drugs for!
The second surgery was scary because I was told if my sternum was not closed enough I would have to get a titanium plate put inside my chest. I decided I needed a health advocate on standby during the surgery. She made sure my wishes were carried out and that I wouldn't become a medical experiment.
The third surgery was as result of a huge painful hypertrophic scar that formed over my incision. It took a while to find a doctor I thought I would be comfortable with. Thought is the operative word. The doctor conducted a video visit while I was in his office. When I asked where he was I was told he was between surgeries. On the day of my surgery I did not talk to him until seconds after being giving the Propofol. Maybe he was having more video appointments. I don't know. I was not afforded the opportunity to discuss the action plan. I knew I wanted a picture afterwards and I was lucid enough to ask the nurse to take a picture. The next thing I knew I was being dressed and prep to go home. I also had a surgery on my left wrist at the same time. In looking at the scar I believe a student or someone with an unsteady hand made the incision! I suffered a major infection and the surgeon refused to see me until I told his nurse I would file a complaint with the medical board. I had to get treated by three different physicians who all said the surgeon should be the one treating me. I don't know if it was a case of ego, pride or stupidity with this surgeon. I didn't want this horrible experience to happen to anyone else so I filed a compliant with the medical board. Doctors simply can not forget to follow-up on a surgical patient who is having complications. What I learned from this was how to be a better health advocate for myself and others. If something feels wrong or in my case you didn't need to be a trained medical professional to see I had a serious infection causing my skin change colors, smell and ooze. It's okay to see another doctor if you can't get in with your primary surgeon. If I didn't seek care I would be dead. Always take pictures or video of what is happening to you. This helps to explain to the doctors your condition. It also becomes part of your personal testimony when you start helping others. Sometimes you may feel great when you see your doctor however it is important they have a clear idea of your medical challenges. The video and pictures will speak for you when you can't.
What else have I tried?
- High quality supplements
- Foot Detox Baths
- Far Infrared Sauna therapy ( some people can not do this)
- Allergy testing
- Anti-inflammation Meal Plan
- Specialty lab testing
- Methylcobalamin injections (B12)
- Acupuncture
- Bio-Stress Assessment
- Thermography
- Various cellular cleanses
- Homeopathy
- Essential oils
- Chelation Therapy ( used for detoxification of heavy metals)
- Ten Pass ( used to help stay well)
- Huperzine A
Advice to others:
You will always know YOUR body better than anyone. You must decide for yourself what YOUR wellness and life looks like. Don’t be afraid to try new things for your wellness. Don't be afraid to fire your physician if you are not improving. Considering there was only one drug indicated for myasthenia gravis by the FDA everything else is OFF label use!! Now there are four with more coming. Make your physician aware whenever you start something new. Seek answers to your wellness even if it is not popular, sanctioned or recognized by others. If your doctor doesn't seem concerned about your wellbeing or spends less than 10 minutes with you find another one. You don't want a pill pusher as your doctor you want a partner in your health and wellness. I changed physicians at least six times until I found a good fit. Seek assistance from a functional medicine doctor . THIS IS YOUR HEALTH!! Share your wellness with others. Be sure to thank your caregivers for their assistance as they provide it.
Helpful Links:
Find a functional medicine doctor www.IFM.org
www.PangaeaRx.com Use Discount code MGHS for custom blends and save 20%
CBD companies with quality products
Home - The Georgia Hemp Company
www.premierspecialtypharmacy.com
Living Fully
I am grateful and thankful for every day I do not have to subject my body to toxic drugs and body moves when I want it to move. I have been able to travel the world and experience different cultures, provide much needed items to economically deprived countries, create fundraisers for the causes close to my heart, meet some amazing people (everyone is a VIP so I don't get hung up on titles or status), zip-lined in several countries, snorkeled in Hawaii, found the best gelato in Italy and the tenderest calamari in Montenegro, photographed my journey and I'm just getting started! Life is waiting for you to enjoy it. Create a vision board and get back to living the life you were meant to live!
Are you available for speaking engagements
Yes, Dawn is a motivational speaker, health advocate and so much more. Dawn is the author of four books. She has a naturopathic nutrition diploma and functional nutrition coaching certification. She is a certified personal trainer as well a certified health and wellness coach, Lifestyle medicine wellness coach, biofeedback and thermography technician, reflexologist, postgraduate in skin care, and an ordained minister. She is married with one daughter and a dog. She enjoys traveling and photography.
She is a former MG Walk Hero for Georgia and MG Walk Ambassador Winner! She has appeared on Atlanta & Company, V103, Star 94.1 and The Game 92.9 advocating for Myasthenia Gravis awareness. She remains passionate about finding a cure for MG one day. She strives to bring awareness not only to MG but to health disparities as well. She offers a workshop based on her training with Harvard School of Medicine and her own personal experience with health disparity.
She is the founder of the Myasthenia Gravis Minority Group and the Myasthenia Gravis Holistic Society www.MGHolisticSociety.org.
Wellness.Travel. Balance. Fun.
CBD Oil
Friends and Family Holiday cruise
Friends and Family Holiday cruise
Try CBD for yourself. Online ordering available with ThoughtCloud
Friends and Family Holiday cruise
Friends and Family Holiday cruise
Friends and Family Holiday cruise
Friends and Family Holiday Cruise
12/24/2023
Sun Dec 24, 2023Fort Lauderdale, Florida
Embark - Time subject to change-04:30 PM
Mon Dec 25, 2023 At Sea--
Tue Dec 26, 2023Labadee, Haiti07:00 AM04:00 PM
Wed Dec 27, 2023Falmouth, Jamaica 09:30 AM 06:00 PM
Thu Dec 28, 2023At Sea-- Vision Board Workshop
Fri Dec 29, 2023 Nassau, Bahama s08:00 AM 05:00 PM
Sat Dec 30, 2023 Fort Lauderdale, Florida
Disembark -
Pricing online is based on double occupancy. If you have more than two people in your cabin the pricing will be different.
Call 844-688-8728
Affirmation
Friends and Family Holiday cruise
MG Empowerment Wellness Retreat
I pay attention and listen to what my body needs for health and vitality every day.
MG Empowerment Wellness Retreat
Myasthenia Gravis Wellness Cruise
MG Empowerment Wellness Retreat
Coming Fall of 2023 In Wisconsin
MG Awareness Day
Myasthenia Gravis Wellness Cruise
Myasthenia Gravis Wellness Cruise
Join ME for our M in Atlanta on Saturday, June 3, 2023 from 10AM to 2PM for the MG Awareness Day event. Register at www.MGAwarenessDay.org
Join Niki and Courtney in Green Bay on the same day and same time
Myasthenia Gravis Wellness Cruise
Myasthenia Gravis Wellness Cruise
Myasthenia Gravis Wellness Cruise
Details coming soon
Check out my books
Vision Board Workbook for Kids and Teens
Vision Board Workbook for Kids and Teens
Vision Board Workbook for Kids and Teens
Great book for ages 7-13
Self—Care in motion
Vision Board Workbook for Kids and Teens
Vision Board Workbook for Kids and Teens
Take care of yourself first.